We’re the Colellas! Grant, Alexa, Ryan, and Charlotte (11)
We’re from all over, but we live in Champaign, Illinois, a little south of Chicago. We like pool days, superhero movies, and pizza nights and love anytime we can be near a beach.
Charlotte was diagnosed with LGMD2C following an episode of Rhabdomyolysis - a rapid die off of muscle in response to illness or stress. She was admitted to the hospital with suspected hepatitis, but a clever geneticist recognized her symptoms and requested genetic testing. It was then we learned that the worst news in the world is not a horrible disease, but a horrible disease you can do nothing about. Nothing gave us the drive to do something than being told there was nothing we could do.
Since then, we have been working towards a future where every child with a diagnosis like hers is told. We have fundraised, raised awareness, and participated in every study opportunity that was available. Charlotte, eve, took this to heart - “when I am part of the research studies, I am helping other kids too?”
We will never stop trying to build a better future for kids with rare diseases. They didn’t ask for them, and all they are asking for is the same future as everyone else.
You can follow on instagram - @roseandresilience
Charlotte is an incredibly kind and gentle child, who just wants to help anyone (animals included) that she can. When she sees someone that needs help, she is overcome with a desire to give. We are fighting for her because more kindness needs to exist in the world - she’s a bright light who deserves the brightest possible future.
She, as all kids do, deserve whatever future they can imagine and work towards.
